The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

Abstract

<jats:sec><jats:title>Background:</jats:title><jats:p> Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. </jats:p></jats:sec><jats:sec><jats:title>Aim:</jats:title><jats:p> To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. </jats:p></jats:sec><jats:sec><jats:title>Design:</jats:title><jats:p> A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. </jats:p></jats:sec><jats:sec><jats:title>Data Sources:</jats:title><jats:p> Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. </jats:p></jats:sec><jats:sec><jats:title>Results:</jats:title><jats:p> A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. </jats:p></jats:sec><jats:sec><jats:title>Conclusion:</jats:title><jats:p> The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change. </jats:p></jats:sec>

End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

“…Particularly within the papers focusing on Motor Neurone Disease, and advanced Multiple Sclerosis, carers were distressed and frustrated at a situation where they perceived their loved ones to have received a ‘death sentence’ (p. 290) 24 or to be ‘living in the shadow of death’ (p. 16), 6 yet simultaneously facing substantial uncertainty over when death would occur and what would happen in the meantime, resulting in a feeling of living in ‘limbo’ (p. 91). 25 – 38 Some papers highlighted lack of certainty about the future deriving from lack of knowledge: for example, Fox reports that some carers were not aware that Parkinson’s was incurable. 7 A small number of papers reported cases where the carers and the person they cared for did not accept the certainty of death, for example, pursuing experimental treatments overseas.…”

“… 7 , 26 , 47 Carers gave examples of professionals sharing diagnosis in an insensitive manner, leading to a perception that the individual and family consequences of diagnosis were neither recognised nor addressed. 7 , 24 , 34 , 48 , 49 Carer experience of poor, absent or delayed information about support services and resources resulted in feelings of isolation and additional strain. 34 , 47 , 50 …”

“…7,24,34,48,49 Carer experience of poor, absent or delayed information about support services and resources resulted in feelings of isolation and additional strain. 34,47,50 Despite the agreed importance of sharing information about end of life, carers reported difficulties in accessing information. At times this was due to variable practice in talking about end of life and related topics such as advanced planning and treatment options.…”

Flexibility to manage and enhance quality of life among people with motor neurone disease

“…However, it is recognised that their significant others, who are often their informal carers, play a significant role in their lives and the well-being of the two parties are closely related [65,92]. Hence, it is essential that clinicians understand the unique challenges experienced by lay carers [92,93], and the findings of the current study should be considered in view of the patient-carer dynamic. Another limitation is that all the face-to-face interviews were conducted at the study site and this medical environment may have negatively influenced the openness of participants despite the person-centred approaches that were employed for the study.…”

The wish to die and hastening death in amyotrophic lateral sclerosis: A scoping review

“…79 An early introduction of palliative care can also lead to a less traumatic disease experience and help with adjusting to loss and feelings of uncertainty. 15 Furthermore healthcare professionals should be aware of the psychological distress PALS experience. 78 PALS describe the timing of suicide as critical in newspaper articles and personal accounts.…”